We normalise care plans for aged care, but can we say that death literacy is increasing? Depending on which reports you go by, 70% to 80% of Australians don’t experience a good death because of a lack of advance care plan.
Death literacy is a feature in the halls of aged care, palliative care, or through diagnosis. Yet we know 55,000 Australians die each year before the age of seventy. Why then is our death literacy level not increasing?
Let’s look at the barriers that persist in increasing the level of Australian death literacy. And what we can do on a community and sector level to improve it.
Throughout policy, procedure and practical application, we’re still approaching end-of-life service provision as though families and loved ones shouldn’t be engaged. Or that young people don’t die. We assume it is the domain of the elderly and the terminally ill. Therefore, we don’t adequately cater to childhood cancer through to ALS on a social and psychological level.
This stops death literacy from filtering into the mainstream.
- For every eight pieces of content produced with a focus on ageing Australians, there should be two pieces of content where we speak to other age groups
- Instead of focussing all our energy on elderly consumers of death literacy, we need to enable the family, friends and wider community to take part.
Medical dominance of death literacy
Medical dominance is a feature of the ageing process, palliative care and dying. But it can lead to viewing death and dying in a compartmentalised way as a problem to solve or delay. And this translates into over-treatment and loss of capacity.
Just as it takes a village to raise a child, so too should the village bury their dead.
- Work with informal carers and volunteers to help create meaningful input and structures that support buy in across the aged care, palliative care and end-of-life sectors
- Actively encourage community engagement. From death cafes through to community awareness and education evenings, we improve death literacy through low barrier, accessible events.
Reluctance to include lived experience
There are countless people offering their own brand of death literacy advocacy on social media, through blogging and on an informal level. From bereaved partners to parents of suicide victims to communities expecting a lack of care as they age or face life limiting diagnosis, people who have seen the best and the worst of the Australian end-of-life scene. Choosing to silo or ignore this information is often a lost opportunity to help provide support and education. It also reduces the chance of tempering or halting misinformation through exclusionary attitudes.
- Hand your social media over to influencers within the death literacy scene to help share your standing in a mutually beneficial and controlled way
- Make consumer research a part of what you do as an organisation or company in death care services. Not only for the satisfaction levels or to glean testimonials, but to gain honest insights, community interest and inform your marketing and outreach.
Gentrification has reduced the connectivity with our neighbours. As a result, it’s negatively affected our ability to encourage people to reach out and to build networks to support dying people.
That means that many families heave under the strain of unsupported care roles. Stoicism usually fortifies this and a lack of wanting to disclose ‘burden’ to ‘outsiders’.
If no one knows their neighbour, there is no one there to help.
- Make engaging with death literacy a transparent, enjoyable act. Consider trivia nights, Day of the Dead style celebrations and/or adding an extra twist to Halloween celebrations
- Create space for art, music and writing around the carer, dying and grieving processes
- Include memorial art and gardens as part of local neighbourhoods
- Embrace placemaking to invite people to reflect on the people absent in their life through pack benches, viewing platforms and designated sites of remembrance
It’s incredibly difficult to fight for intangible, soft and gooey programs that lack the fiduciary impact that so often rules the private and public health system. Often, the programs that supply the most self-care or awareness are the ones on the budgetary chopping block.
- Invest in people who can keep the death literacy message strong, regardless of prevailing financial conditions. That way, they can pivot programs and direction to suit
- Measure ROI through how much time, energy and labour are you saving in other areas because of having death literacy programs rather than direct financial returns on the programs themselves.
Where the economics rule, surely the risk-adverse policies follow. And this leads to exclusion through limiting access to activities that may promote dignity through to minimising the needs of family and friends.
It also creates conditions where fear of being sued kills off motivation to experiment and try new ideas and programs without evidence or proof. This stifles innovation.
- Ensure programs are scalable so that any activity you undertake can be scaled back instead of cancelled completely
- Draw on experts to design the foundations for your approach to death literacy while leaving space to pivot and experiment as necessary
- Be OK with a minimum viable program or a beta test before committing entirely.
The increasing pressure of conservatism
Programs that should have been well established by now, such as inclusive care for LGBTQIA+ and the Indigenous community, remain a challenge. Families where estrangement, mental illness and/or the simple absence of family support is a feature also faces indirect exclusion. Not to mention the difficulties with the provision of Voluntary Assisted Dying in Australia.
Navigating the desires and doctrines of people that are not reflective of a wider community view but have significant power and sway remains a challenge within death literacy circles.
- Make regular dialogue with the community and marginalised people a part of your yearly plans. Look for the opportunities to speak to a wide variety of people on a regular basis
- Utilise community roundtables, unconferences and other less rigid formats to encourage open dialogue
Death is romanticised, misrepresented, and downright inaccurate in media, film, and TV. On the other side of the coin, taboo, denial and a failure to disclose still permeate the death literacy discussion. Mostly, we have developed a framework that says that grief is a linear process, not talking about death or the departed is comforting, and that the subject itself is morbid instead of healthy.
- Move away from euphemisms and say the damn words
- Use poster art and film to help educate and normalise death as a concept
- Challenge the depictions through online seminars and events.
Cultural normalisation and whitewashing
Within the system of death and dying, we’re not addressing who needs what at any juncture in relationship to their cultural needs. Beyond the discussion of last rites and body disposal, our cultural sensitivity to death is lacking. And this comes through in the way we deal with traumatic death especially.
The lack of understanding surrounding the multicultural taboos related to death and dying is problematic. Assumptions often guide decisions about whether or not certain practices and discussions are appropriate. Should you share a deceased Indigenous person’s photo? How do you have an appropriate conversation about burial and body disposal with someone of the Jewish faith? Can you talk to someone from an Asian cultural background openly about suicide? All of this and more creates tension between service providers and recipients in the pre-planning, planning, production and post-production stages of death care.
- Commit to sensitivity training
- Preface disclosure of death-related information with suitable trigger warnings, online and off
- Let the person receiving the death literacy decide where the level is.
Not catering to traumatic death appropriately
People can die suddenly. Car accidents, workplace accidents, suicide, homicide, misadventure and more kill people. Yet, our inability to incorporate traumatic death effectively into death literacy and the piecemeal nature of information continues to create issues. This reticence spans across policing, social work, psychology, the coroner’s court and death care industries.
Improving death literacy related to what you can and should say (and what you shouldn’t) during a traumatic death is a vital part of reducing grief impacts. With suicide, it may even reduce the risk of self-harm after the event in others.
- Listen to the people who have been through the traumatic death process and apply their feedback to our policies and procedures
- Make use of content marketing to provide traumatic death literacy in an accessible format
- Work closely with networks of counsellors and psychologists
- Include sensitivity and Mental Health First Aid training as part of the mix.
Death literacy is a community need
When we die better, we grieve better, too. Our recovery is far less traumatic and complex. By reducing the impact of the threats to death literacy, we can help people die well. And appropriately support their loved ones while doing it.